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PJ's Story

First of all let me say this little boy is my angel!! He was born January 6, 2011 perfectly healthy with two perfectly healthy siblings, James and Arietta Kay. Looking back I did see small things of concern through his first year. He was not talking or showing tons of expression as my other two did. I was always told though "Every baby develops differently" and being a stay at home mom with an infant, one year old and two year old, and their father being deployed to the Middle East I stayed very positive and pressed on not giving those "little things" much attention.

Once my husband returned from deployment it wasn't but two months later when things took a drastic and heart breaking turn. We awoke on January 1, 2012 to a awful screech. I ran to the boys room and found my baby boy blue and lifeless in his crib. I was in complete panic. I was useless in this situation and thankfully my parents were visiting for the holidays, as they were the ones who dialed 911 while my husband and I both freaked out. Our son came out of this "episode" after 10 minutes. He had a CT scan done in the emergency room which showed nothing and they sent us on home.

We went on with our lives and about a week or so later our son turned blue again and we noticed his eyes deviating to the right. Drool was literally pouring out of his mouth. We called 911 in a panic and were sent to a children's hospital in the ambulance instead of the nearest ER. There they performed an MRI and EEG. They told us the MRI was clean but the EEG showed a lot of irregular activity. They sent us home with Keppra and diastat to administer in emergency situations. I was devastated and confused and really didn't want my son on any medication like that. I didn't want to think my baby had a seizure disorder.

Two days later, after our older babies were already put to bed, we snuggled our youngest and gave him his dose of Keppra. He just started to doze off in my arms when his eyes popped open deviating to the right and his head pulled strong to the right side. I looked on in disbelief as my baby struggled. He began vomiting. He came out of the seizure, or so we thought, and then not even two minutes later he went into another one vomiting again. I called the on call neurologist completely frantic and was told to give him more Keppra. I did, and he threw it up, still seizing. They told us to give him diastat and call 911. At the hospital they observed him and assumed the seizure was over and they watched him for 24 hours. We were then told that it seemed he had a idiopathic seizure disorder that he probably would not grow out of but they were in high hopes that he just might. We held onto this thought and went home now also on Trileptal and also with the knowledge that we would most likely see more seizures.

Around this time we relocated from Florida to North Dakota. We were very quiet about our sons condition because at the time I wasn't really in acceptance of everything. Quite frankly, I didn't want to believe my child was sick. Right when we arrived at North Dakota things went to a totally new level. My little boy began seizing and he was stuck later we discovered it was status seizures. Nobody knew what to do with him. He seized for two hours. Finally, out of nowhere, they stopped. The neurologist in North Dakota (there were only a couple of full time pediatric neurologist there at the time) let us know that this was above him and if it persisted we would have to leave the state through the military. We went home only to return again after a few days from a seizure that lasted an hour. We saw the same ER doctor and he told us we were being life flighted to Mayo Hospital in Rochester MN. I freaked out but was told not to worry and they were "the best of the best". When we arrived they did a spot EEG and noticed abnormal brain waves and told me that it was idiopathic and that I would see more and sent me on my way back home to North Dakota. I knew at this point that something was VERY wrong. I told the doctor "I will be back in less then one month. I KNOW he is going to do this again." and the doctor pretty much brushed me off....I was thinking wow for the best of the best he sure wasn't very great.

Those next three ish weeks will forever be burned into my memory. We went to the ER multiple times for his seizures and took around five trips in an ambulance due his seizures...we were in the ER about twice a week. I watched my child fade away. Eventually, he started physically seizing every two to three minutes. He would drop to the floor, turn blue, drool, and twitch (almost looked similar to a hanging man jerking). I just held him all day and all nightthrough his endless seizures recording them and documenting all that I could. I called Mayo almost daily and they kept upping his doses of Keppra and Trileptal and told me "give the medicine around ten days to get good in his system.." Deep down I just knew that this was not at all right.

Finally I had enough we took him to the ER were they knew him by name now. He seized over EVERYTHING. A touch, a sound, ANY stimulation. The nurse came to check him and bumped the bed and it set him into a status seizure. I held him for two hours in the hospital alone, in the dark, praying the seizure would stop. I finally yelled at the nurse to send me to Mayo. I was fed up and tired of watching my child hurt and tired of waiting an hour to prepare his fosphenytoin (the Ativan he was getting he didn't respond to). They agreed and we were sent to Mayo.

Once we were there in ICU they just told me they would monitor him for 24 hours and we would see the neurologist in the morning. I felt a little like I overreacted a bit. I was so scared and confused though and knew that the hospital we were at before had NO idea what they were doing. They told me to put him in a stroller and walk him around the floor to try and stimulate him and try and help the drugs ware off. Right when we started walking he seized again. For once I was happy he was doing this! I wasn't crazy, there was something wrong. The neurologist immediately came to his room and told the nurse if he has any more we will have to administer more emergency drugs. Well he did and he maxed out of the Ativan and the Fosphen. They did a spot EEG and then things went crazy. Eight nurses piled into the room they told me I would probably want to leave as they were going to be intubating my son. I kissed my baby boy, now not knowing what in the heck we were leading to. My husband was taking care of our other little ones in North Dakota and I called him hyperventilating in the snack room. I was so scared and I didn't want to be alone. It was too much for me. After he talked me down to a manageable state, we both decided to try and see what was happening before we made drastic decisions on him coming there and having my parents, who lived in Oklahoma, pick up our children for however long.

I stayed by P.J's side for three weeks while he just laid in bed motionless. We found out he was having lots of subclinical seizures (which I didn't even know about at the time...google was kind of my friend since some of the doctor talk was out of my league!).The doctors kept running tons of test. He was still seizing over the coma but it had slowed down a bit. I knew if they brought him out of the coma he wouldn't make it. I had hit my lowest point. I was trying to come to terms with losing my child. My beautiful baby boy. I talked to him constantly...just so he could hear my voice. I wouldn't leave to shower willingly (I only went about three times until my husband got there) or just to take a walk around to get away from the obnoxious machines. I just set by his crib with the TV off and talked. I know I drove the nurses crazy, there was a nurse with him 24/7. My husband decided it was time for us to send our kids to stay in Oklahoma for a while and he prepared to make the drive to Rochester. Thank God for my parents being willing to do this for us even with my father undergoing radiation and chemo treatments (Now I know where my son gets his strength from!!).

The day my husband came to be with us we got awesome news, the team of doctors came in smiling. They thought he might possibly have an abnormality in the brain. There seemed to be a bit of focus on the right frontal lobe. They wanted to go in for emergency brain surgery. I just wanted him saved and I didn't object to their plan and neither did my husband. We wanted our baby boy back! They started lowering his Midazolam, and his shots of Fosphen...they slowly started to try and wake him from his long sleep. They took of all his EEG leads and we got to wash our baby's hair for the first time in WEEKS!! He went in for a special MRI and then the next day, March 28, 2012, by the time the drugs were finally slowly wearing off he was going in for surgery. It didn't hit me until I walked him back to the OR that this was serious...call me weird but I think I was living in a fog for most of my time there (we were now creeping up on a month) This also makes some of my memories of all this blurry. It's strange, but the emotion from an event like this is just so raw that it is impossible to shake.

After surgery we were told that they took more then they thought they would need to, but felt that he had a good chance at being seizure free. They told us he may have a heard time moving the left side of his body but that was something that could be expected from the procedure done on the right side of his brain. When I walked into the recovery room I was in complete and utter disbelief....my son had a foot long gash from his forehead to behind his temple. He was trembling (almost looked seizure ish) and they told us he needed a blood transfusion. I felt like I was in a movie. My husband told me not to cry so I set down mouth wide, eyes glassy, and my head feeling like it was floating. Funny how you have second thoughts after it is all done...the only thing keeping me together was knowing he would not be here without this being done and having the support of my husband.

Amazingly though, the next day our little boy was rolling over and feeding himself in a highchair! Unbelievable, this kid was so unstoppable! He became my Gladiator, my little hero. We went home with more drugs then we came with Ativan (he was weaning off of it), Dilantin, Topamax, Clonezapam, Keppra, and Trileptal now being given three times a day. We began seeing our little boy back. He remastered walking and started trying to run. He would babble...say "Momma" and "Dug" (for dog). We were told not long after we were discharged from the hospital that the pathology report came back and it did come back as Cortical Dysplasia Taylor Type 2B. We were thankful to know the culprit that had caused our child, and our family so much pain.

Once at home, about a month after surgery, my son was very unsteady and unfocused. I thought the worst and we went back into the ER again. I told them he has had status seizures before and he seemed like this during them. Paul started throwing up. He threw up about five times, the last few times were strictly dry heaves...he had NOTHING left to throw up. I was freaking out, I thought the seizures were over with and I was just sure that this was them coming back again. Fortunately they took blood and checked his levels of medication first...we found out he was highly toxic on dilantin. They had given us the liquid form and we were told it had a tendency to separate and it was fairly easy for toxicity to happen with it. The "Shake Well" sticker was covered by a flap on the bottle and we weren't shaking it enough (we had a habit of shaking all his bottles a little bit before syringing the medicine out). He was hospitalized for two days until his levels were back to where they should have been and we were sent home with chewable dilantin---much safer!

We went six weeks after the surgery seizure free, just about, and on Mothers Day 2012 he had his first seizure (that we physically saw) after surgery. We were then informed that they believed that the dyplasia was thought to be running throughout his brain like "tentacles". My husband and I were bummed. We truly thought he was done with seizures. He then started having three a day and so we started the Ketogenic diet. The diet was a nightmare for us to say the least! Our son hated all the food...we bought flavoring, bought Walden Farms products, we did everything we could to enhance the flavor of the food but he was not having it. I had to syringe feed him his meals to keep him ketotic. I was frustrated that he didn't take to the food like some children did but he is one stubborn kiddo!! We went four more weeks seizure free after the start of the diet and then he started having about three seizures a day again. We moved to Washington State and we took him off of the diet in December 2012 due to it not working and his hate for it (Paul was thrilled to finally get his way with food!!). Currently P.J is still having seizures. On a bad day we have seen up to four seizures. All where he drops and begins drooling and turning blue. We now apply oxygen to help him. There are some days though were he gets a break from any physical seizures and gets to be a "normal" kid. We love those days. :) He is trying to talk more now and has about a dozen words (some not super clear but they are words none-the-less), although his words come and go depending on the type of day he has. Right now we are going through the tests to try and see if there is an area causing problems that is operable. We are not wanting to do this again but have found out recently that the right side (specific area and size currently unknown, hopefully test show something SMALL) that when it seizes subclinically it sometimes spreads to the left side of his brain. This is where we see the physical seizures. We need to save the functional parts of his brain and since the medication and the diet didn't work we have to do whatever it takes to give our child the best chance at a happy, fulfilling life. The hardest part of this is trying to decide what HE would want...and trying to do right by him. I pray that we will have an answer soon. We should know within the next couple of months.

5 comments:

I am so sorry Marice! I love you and I want you to know that I am always here for you if you need anything at all.You are a great mother! The BEST! My prayer are with you and your family.I hope you get your answer and all your prayers answer as well. I love you like a sister!April Chevalier (AKA April Dodge-Benavidez)

April you are so sweet! PJ makes things a little easier to cope with things since he takes on these challenges like a little champion! Thank you for the compliments and most importantly for the prayers...prayer has worked miracles on him before and I have faith that they will again :)

Marcie this is the first time I could read the whole story and I am in tears I guess meeting him and seeing how wonderful you all are and he is such an awesome little guy and reading what his days are like and what you and JJ and the other kids see every day just made me cry. I just want to hug you all. My family is here for you all whenever you need us, From babysitting to whatever I would not mind at all to watch James and Arietta if you all need an extra hand. All of you are in our thoughts and prayer EVERY DAY !!

Liz, Thank you so so much for the support and the prayers. Just knowing that we have people here for us truely means the world to us! Honestly, getting out with people and doing normal family activities (despite the scare of seizures) helps us a lot so thank yall for hanging out with us---All the kiddos and Jorge and I all had such a good time, despite the weather! See yall soon, and again thank you for the prayers :-)

I can fully understand everything you have gone through as I was there in 1992 with my son. He is now 21 and has had seizures everyday of his life we have tried just about every medication under the sun and he has had three surgeries to try to help all to avail. Sorry I cant offer much help in the way of a good future but as parents we love our children and will do anything to get them a better future. You have to carry on and try to give your son the best future that you can.